Jamie: I’m really excited with the panel we have assembled today to talk about pediatric specialized nursing. I’m going to introduce them in no specific order, just go down my list here. I have Joetta Wallace. She is Program Coordinator of the Pediatric Support and Palliative Care service at Miller Children’s Hospital in Long Beach, California. She has a background in Pediatric Oncology nursing and works as a Nurse Practitioner in a Pediatric Hematology and Oncology private practice in that area. First off, Joetta, thank you very much for joining us.

Joetta: Thank you for inviting me.

Jamie: I also have Kelli Anderson. She is a nurse with 22 years of experience. Twenty years at Children’s Hospital in Los Angeles. She is currently working within the Heart Institute, Cardiac Catheterization lab and cares for children with heart disorders. Kelly, it’s great to talk to you.

Respondent: Thank you for inviting me today.

Jamie: And, last but not least, LaDonna Northington, pediatric nurse for over 30 years. She is currently also a faculty member of the University of Mississippi School of Nursing. Works also part-time as a manager in Ambulatory Pediatric After-Hours Clinic. LaDonna, thanks for coming and joining us today.

LaDonna: Thank you.

Jamie: I’m going to start off with asking a couple of questions. I want to start with Joetta. You said in one of the [audio gap] that you have in the newsletter from Nursing Notes this month that pediatric nurses have the lowest turnover rate in any department in the hospital because of the way they [audio gap] collaborative effort comes together in pediatric nursing. Could you explain a little bit about why you think that’s so important?

Joetta: Well, I think that I was specifically referring to the Pediatric Oncology nurse population. What I find—I’ve worked with nurses all over the Children’s Hospital here now and I see that the nurses in pediatric oncology are much more collaborative with the medical practice. They participate in the planning of the patient’s care along with the physician, the social worker, Child Life specialist, respiratory therapist, pharmacist, and all the other disciplines. I believe most of the centers in the United States have a rounding once a day with that team for that patient population. When that happens, the nurse doesn’t feel like the person that’s going in there just to administer medications. You’re not the person performing the task, so to speak, but you’re actively participating in planning for how that’s going to be done the most effectively and the most safely including the patient and the family in their care.

Jamie: Kelli, do you find that to be the case with you as well, that you really enjoy being a pediatric nurse as part of that total care team?

Kelli: I absolutely agree. I think it affects all elements of pediatric nursing—the different disciplines. It’s all very much multi-disciplinary, very collaborative. They do physician rounds. You play an intricate role in overseeing the child’s care and pulling all those disciplines together to ensure that the patient is getting the best care and that everybody’s on the same page. It’s quite a task but it really comes down to the nurse to pull everybody together to do what’s absolutely best for the patient and the family.

Jamie: It’s interesting you say “the family” because I know, LaDonna, you believe very importantly that pediatric nurses are advocates for their patients but they also need to be advocates for the families because those patients are really part of a family unit much more so than in the adult population.

LaDonna: Oh, yes, most definitely. One of the caveats I think that probably differentiates Pediatric nursing from generalized adult nursing, if you will, is the fact that every pediatric nurse knows that you really cannot take care of a child without taking care of the family. The family is whoever they decide the family is. In some instances, if there’s extended family that lives far away the family maybe the babysitter that the child goes to every day or the person that keeps the child or a friend of the family. Involving them in the care of that child and knowing what the child’s nuances are and how you get them to cooperate. Because depending on the age of the child, they have their own developmental stages. We’re strangers to them. We’re trying to integrate care into what they normally do in their daily lives as opposed to imposing something on them. Definitely involving the family, communicating with them, learning about likes and dislikes and ways that you can coax children to do certain things and sometimes even getting the parents involved in caring for the children empowers them and gives the child and the parent more sense of cohesion as opposed to just the nurse coming in and doing two all of the time, but that the parents can be a part of the care that’s delivered.

Jamie: You said something interesting there about involving the child as well. Because of the developmental scale associated with pediatric patients from infants and newborns all the way up through teenagers, how important is it to really engage the child in their own care especially as they become older and more able to be actively involved in that care?

LaDonna: It is most [integral] because in order for any patient to be compliant with their healthcare, they got to understand and agree with the plan of care that’s being delivered. Of course, you got a six-month-old that definitely the decision of the parents. Even children as young as two, three, four years old, if you explain it to them in terms that they can understand—and remember not to give them choices they don’t have. They don’t have a choice not to have a medication or have an injection or do something but you give them the option of, “Do you want to do it now?” or “Do you want me to come back after a cartoon is over?” If you have that option, that gives them a sense of empowerment as well. Of course, as the children get older into the school age and particularly in the teenagers, then they have a say in what happens and how it happens. Again, as long as the nurse and the healthcare team understands that “no” is not an option. You integrate that into—they’re just basic growth and development and giving them an option of planning their care and when it’s going to occur. One of the things that always tickles me as a staff nurse is that for some reason we feel like everybody should have their bath at nine o’clock in the morning because that’s generally when we do our assessments and getting ready for meds. But there are a lot of patients who take baths at night. Imposing them to make sure that they get up and get out of the bed at nine o’clock in the morning, for teenagers who are not having to go to school, that is just not their thing. One o’clock in the afternoon maybe when they decide to take a bath and that’s perfectly okay. If you got a treatment that can wait to that late, then you do that around the time that is more in tune with what that child’s normal routine is as opposed to just trying to impose the standardized times that we see routinely in hospitals, so definitely involving them in the decision-making when it’s appropriate.

Joetta: We definitely see this in Pediatric Oncology because, considering the diagnosis, many times the family will say, “Well, we don’t want the child to know that they have cancer.” Our answer: “Even if the child is as young as two or three we will explain—or at the other end of it, the adolescent young adult—again the parents want to try to shelter their child and protect them from feeling the sadness that they’re feeling perhaps. But we explain to them that not involving the child at the developmental level that they can understand it is like trying to win a football game but don’t tell the quarterback which way is the goal. The child has to participate in it and we find that even, like you say, children as young as two years old can understand that they have a condition. The way I presented to them sometimes is: “Everybody is going to have a job to do while we’re trying to get rid of this leukemia. The doctors have a job to do. They’re going to figure out what’s best thing to do. The nurses have a job to do because they’re going to help make a plan that will work for you and your family. But you have a job to do also because you’re going to have to try to get well and you’re going to have to take some medicines and sometimes you’re not going to like those. You have a job in letting mom and dad know when something’s not feeling right.” It’s very much using them as part of it and then they don’t have to—I tell the parents, “Now you don’t have to walk out of the room whenever the phone rings and you want to talk about your child’s condition with whoever is on the phone.” They have to know what the name of the disease is. They end up figuring it out even if you don’t want to tell them.

LaDonna: Exactly.

Kelli: Now with our kids with congenital heart disease, we take a little bit step further that they’re born with this. They have to deal with this disease process the rest of their life. They do have to be very actively involved and understanding the disease process because it’s never going to go away. Even if they’re such a [unintelligible] they can still have issues as they go along. A lot of surgeries we do now, we didn’t do in the past and we are prolonging their life and dealing with those issues. We’re finding a lot of kids that have been followed here since birth and now they’re having to be moved over into the adult world. We have to have a whole process set up now for them to transition into the adult world because they don’t want to give up what they felt so comfortable for so many years being followed here at Children’s Hospital. We have a whole another issue now we’re dealing with, but they very much have to know what’s going on.

LaDonna: Yes. We all are trying to figure that transition program.

Kelli: Yes.

Jamie: Kelli, you made the comment in one of your quotes on the newsletter that’s out this month. You said that children don’t focus on the fact that they’re sick. I think some of the comments that have already been made about the parents bringing their adult fears and understanding and concepts into helping to shelter their children, and what they think is helping to shelter their children—really children don’t focus that way. Could you explain a little bit about what you meant by that?

Kelli: Yes. Especially when kids are younger, they’re not looking at the bigger picture: Am I going to die tomorrow or next week or how I’m going to feel? They’re just worried about: Do I get to go to the playroom in the next few minutes? Do I get to have the popsicle? Am I playing for today? They don’t focus on that. Well, the family does and they do see the bigger picture. I think that’s why they have a hard time wanting to shelter them and not tell them the diagnosis or what’s going on. It’s not really [inhibiting]. Yes, they need to be a part and they need to start learning not to sit on it and feel like I can’t live my life. They’re just not at that developmental level. That’s part of the beauty of working with these kids. They really live for today or get through the moment and they aren’t dreading, “That I may not make it the next five years or whatever.” That’s the part that intrigues me about working with these kids. Yes, it’s a challenge to make them understand but they’re very different from the adult population.

LaDonna: You’re exactly right. My background has been in pediatric critical care before I started teaching full-time. Even those kids who had grim prognosis usually would look at the nurse and look at the parent after a while and say, “What is it that you’re not telling me?” or “What’s happening with me that I need to know?” They’re pretty instinctual about reading body languages and tones particularly from their parents and grandparents and others. I think just the honesty too as well. It’s a big, big part of what we do with children is to be honest and tell them—if this is going to hurt; if this is going to be painful but it’s going to be short; I’m going to be here, mom’s going to be here. Keeping that credibility with the kid and treating them as if they have a right to know what’s going on. You see that, particularly, the older they get.

Jamie: Joetta, my experience with children in pediatric care is associated with emergency department care and emergency services care, one of the things that I always try to teach when I’m talking about pediatric care and is kept close to my own practices is the understanding that you really need to be honest and upfront at all times. We do that with all patients obviously. But children, as we’ve already said, are so insightful and can tell when you’re trying to hide something from them. Building that trust is so important in pediatric care. Would you like to comment on your experiences with that?

Joetta: It’s critical. We are all transparent to a child. Even an infant knows whether or not—you’ll see them searching your eyes, they’re searching your hands. They’re paying attention to whether or not what you’re going to do is going to cause them discomfort or even if you’re a person that hopefully they can trust or not. I’ve seen this happen so many times where somebody was trying to mislead a child, even a parent. The child absolutely saw through. We had a child that—he was about six. He came to us from another facility, halfway through his leukemia treatment and had not been told—we were told by the parents that “Do not tell him he has cancer because we have not used that word in front of him, he does not know he’s got cancer and it’s important that he doesn’t know that.” So we were in a room right next to the playroom, a multi-disciplinary team was talking about this because we’re saying: “This isn’t okay with us. This is not going to work. We’re going to have to talk to this child. We got to bring him into this fold of how to cure this.” While we were talking I come out of the room for just a moment and here he was in the playroom with his IV stand and the bag hanging with the red chemotherapy in it. Another child in the room who’ve been in and out of our hospital a lot, was very savvy, asked him what he had. The kid says, “I don’t know.” They said the little boy very calmly says, “Well, if you’re on this unit, you’re getting that red medicine, you’ve got cancer.”

LaDonna: Oh, dear. Exactly. And kids, when they visit and when they talk, that’s very curious if you’re in a hospital. Even I had students on my Oncology floor here at the Blair E. Batson Hospital as well. Even when they’re just on the general units and if a child is with the parents and the parents are talking and the children are listening and conversation goes, they hear it, they know it. It’s quiet as people try to be on the nursing units, when rounds are being made. They hear it. That, again, to me it goes back to that trust issue. How can we expect the kids to cooperate and ask them to do what we are asking to do when we haven’t been upfront with them and say, “Yes”? You press the [situation] say, “Yes, this is very scary but here’s what we’ve done, here’s what we can do. Here’s Mary Jane. She’s been through it before. She can come in and talk to you,” provided the parents are okay with that and most of them are getting parents support groups. Again, because the trust, helping the parents to understand that and that goes back…

Joetta: So I told the parents that story and I tell them, I said, “He’s going to figure it out eventually and you want to establish when and how strong you want his trust to continue to be [unintelligible] for the rest of his life.”

LaDonna: So it goes back to that patient’s standard care. Part of the patient’s standard care, family’s standard care, is helping the parents to accept and understand. Sometimes as nurses we spend as much time teaching and working with the family as we do the sick child depending on what the diagnosis and what’s going on with. You spend as much of your energy with the patient’s family.

Kelli: If not more. I think sometimes we spend more time with the family than we do the patient and it’s like taking care of two patients then or multiple.

Joetta: Multiple, yes. Especially now in my role with—I see enough a lot of patients doing palliative care and you’ve got a tremendously large family. With that diagnosis, you end up with an entire community of that child. Of course, the parents and the siblings, and the grandparents, and the aunts and the uncles, but most kids are also part of a church group or part of a Boy Scout troop or, yes, their day care, their regular school, some [unintelligible] else. If they’re from a small community and something like this is happening to the—everybody in the community knows about it and I’ve had community meetings with over 200 people in them. The family wanted to have everybody understand what was going on with this child.

LaDonna: Yes.

Jamie: I’ve had that experience too. A child died in my daughter’s middle school last year. My daughter came home and said that everybody in the school was raising money and they were bringing in different things to raise the funding in different ways to support other children that were sick since they had lost this friend. I was amazed after talking with the administrator about it that the entire school, you’re right, took ownership. Every one of those kids whether they personally knew that child or not, took ownership of: “I need to help support other kids.” It’s amazing to see that come out. Children are just so giving.

Joetta: And they grow from that experience. Many times I stop and think, “Oh, my gosh, how hard it must be to this entire room of third-graders to have experienced the death of a friend. Many of us as adults have never had a friend die. Maybe have parent die or a patient die but how many of us have had a friend die. I was thinking, “These kids are experiencing this so early,” but I’m also learning that they become stronger and a different person because of that. They’re much more tolerant. They don’t necessarily look at somebody in a wheelchair or with a challenge and say, “That person has to take a short bus to school” or something or thinking negative things. They reach out to them and they recognize that there are people in our communities, all around us, that are not exactly like us.

Jamie: We’re getting towards the end of this, unfortunately, way too short discussion. Maybe we’ll have to try to continue this in another time in a longer format. I’d like to ask each of you to share just a final quick thought for people considering move in to pediatric nursing. Perhaps they’ve been in another specialty and they’re looking to change careers or move in a different direction. I’ll start with Joetta because you’re involved with palliative care in Oncology nursing often with some grim outcomes, what would you say to somebody that was interested in pediatric nursing but was concerned about their own emotional attachment and well-being?

Joetta: That certainly is something that they will—I get that a lot especially from adult oncology nurses who will say, “Oh, my gosh. You are taking care of children with cancer. Do you get to go like straight to heaven or what?” I would respond that I am planning on that backdoor entrance. It’s pretty important to me. But, in fact, that there are many more happy days than there are days that we wish hadn’t happen. Even on those days where something very sad has occurred, we can usually find something positive about it and we can feel that we’ve actually held somebody’s hand and help them make that transition in a positive way. I have attended to deaths of children where I believe that the beauty of what went on in that room was as powerful as a birth. If there are ways that nurses participate in making every patient’s experience a meaningful one, whatever stage of the condition that is. I just tell them that—I get an opportunity to talk to the many young people trying to decide on their careers. I tell them that the good thing about nursing is it is so multi-faceted. There are so many different types of a nurse. Every nurse doesn’t have to work in the emergency room and look at blood and guts all day. Every nurse doesn’t even have to take care of patients all day. But there are so many opportunities in this field. Then I, of course, have to tell them that I think pedia is the best because—but I really don’t know because I’ve never taken care of grown-ups, I don’t like them. I really don’t know if it’s better or not.

Jamie: Kelli, what about you? Do you have any thoughts for someone considering a change to pediatric nursing or getting in to pediatric nursing as a new nurse? What would you say is the direction for them to start down that path?

Kelli: I agree with her. There is vast diversity in nursing and you really have to find your passion like I’ve talked before and what interests you. For me, I did take care of adults. I have experience. But there is a love of children and love of pediatrics. You really have to love what you do and figure out who you are and what you want from the experience. I have to agree most days, even the children are sick, there’s usually something positive and that’s what keeps bringing us back day in and then day out. It’s a smile on their face. She made a little difference in their life. You help them cope with the disease. Maybe have the family come together. Whatever your goal is for the day or whatever happens, there’s so much more than nursing than having that—or that’s the task. There is just the whole broader spectrum. When new nurses come, I always ask, “Is it what you thought a nurse is?” We have a program here. We have high school students that come through them and never once have I heard somebody say, “It’s exactly what I thought before I came in here.” It’s never that way. It’s a whole different feeling. It’s hard to express that to people or understand exactly what a nurse does. That’s more than bedpans and blood draws and passing medications. It’s much, much more than that. If you are interested then I would encourage somebody the Job Shadow or—give a little taste of what nursing does before you make the decision.

Jamie: LaDonna, with the final thought from you as an educator, you’re talking to those people that are training to become nurses and some of them are looking at Pediatric nursing, how do you talk to them about becoming pediatric nurses and encouraging those people to continue forward in their goals?

LaDonna: Well, I think, it’s two for one. We’re pretty fortunate here—as I’m sure they probably are in their respective states as well—that we actually do have a freestanding Children’s Hospital. The pediatric experiences that the students get are from nurses who absolutely love what they do. That, in and of itself, is a contagious environment to be in. As it has been previously stated, there’s a certain I think kind of person who gets a thrill a lot of taking care of children. It’s not for everybody. I have students that tell me that, “Dr. Northington, this was good but I don’t really want to do this,” for whatever reason—“I have kids at home” or “I had a sister die” or something like that. I think that’s just as important to be able to recognize that not everything is for everybody. What I tell them is exactly what we’ve talked about is that you know when you’re good if it’s what you’re going to do is enjoyable to you. When I was a young nursing student thirty-some years ago, we could work on weekends and my roommate absolutely hated every time she got sent to the pediatric hospital. She loved OB and I absolutely hate it. Every time I got sent to OB and I love pediatrics. You just know if it’s for you. One of the concerning things, I think, from an educational standpoint is that there are a lot of educational institutions, who are doing away with freestanding Pedriatic courses and kind of blending the pediatric information into the adult courses. For those of us who are pediatric advocates, it’s a little bit concerning because there’s a lot about pediatrics that can get lost if you just kind of lump it in with just general medical-surgical nursing. It’s one of the things that we’re trying to monitor on a nationwide basis, just kind of keeping our finger on the poles. I grew up, as I said, in the critical care unit and people would always say just like they would with palliative care in oncology, “Something must be wrong, how can you just work with dying children all the time or sick children?” I said, “You know, for me, it was the joy of seeing a child recover and go back to normal. Their family and how appreciative they are of every little thing that you do. How they talk about the care that the kid received.” It wasn’t a focus on the negative ever really. I didn’t go into critical care saying, “Oh, my gosh. Every day I go to work somebody is going to die.” It was quite the opposite for me. It was like, “Let’s see who we can get off the ventilator and out and back in school so that they can go back and play with their playmates and be with their sisters and brothers. I think helping new nurses to understand where your glitch is and then if you start in pediatrics and realize it’s really—whining kids or crying kids bothers you—then it’s probably not the place that you need to be and being okay with it because somebody’s got to do all the other specialties as well. But you rarely find a lot of turnover in a pediatric hospital because nurses who wanted to work with kids tend to stay where kids are. You can’t just float from place to place. You kind of end up all being vested in the institution where you are, I think that speaks for itself.

Jamie: I want to thank all of our guests on this particular episode including Kelli Anderson from Children’s Hospital, Los Angeles; LaDonna Northington from the University of Mississippi School of Nursing; and Joetta Wallace from Miller Children’s Hospital in Long Beach, California.